Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the creation of a medical information commons, a networked environment in which diverse sources of health, medical, and genomic data on large populations become widely shared resources. The success and value of such a commons will depend on development of policies and practices for effective governance that address barriers to data sharing and are developed with informed input from patients and members of the public whose data may populate it.
The objective of this project is to engage expert stakeholders to inform policy decisions about effective governance for data sharing, while using deliberative methods to obtain informed public input to ensure that the values, rights and interests of individuals whose data may populate the information commons are represented.
Supported by: R01HG008918, National Human Genome Research Institute, NIH
Advisory Council Meeting - March 2-3, 2016
Academic and industry leaders from healthcare systems, clinical labs, technology companies, academia, government and nongovernmental organizations met to provide the Advisory Committee with a platform to discuss current issues concerning data-sharing policies and practices.
Juli Bollinger, M.S., Researcher
Wendy Lee, M.P.H., Project Manager
Carolina Abboud, Research Assistant
Alexis Abboud, Research Assistant
Center Project Personnel
Majumder M, Cook-Deegan R, McGuire AL. Beyond Our Borders? Public Resistance to Global Genomic Data Sharing. Mary A. Majumder, Robert Cook-Deegan, Amy McGuire. PLOS Biology, 2016. Forthcoming
Majumder M, Garrison N, Bonham V, Villanueva A. Critical Distance in ELSI Genomics Research - More Than Advocacy for the “All-Frills Yuppie Health Care Boutique"? American Society for Bioethics and Humanities annual meeting. Washington, DC, October 2016.
McGuire AL, Goldstein M, Rodriguez L, O'Donnell C. Building a Medical Information Commons: Ethical, Policy and Practical Challenges. American Society for Bioethics and Humanities annual meeting. Washington, DC, October 2016.
Villanueva, A. Genes and the Environment: Current Data Collection, Sharing and Privacy Protection Practices. American Public Health Association’s Annual Meeting, November 2016. Denver, Co. Poster Presentation.